This programme of research critically explored the lived experiences of children and young people with limb difference and their families, with a specific focus on how these experiences influence life, well-being, and participation in physical activity. The purpose of this thesis was threefold: First, I aimed to examine and understand the diverse and complex stories of families navigating life with limb difference using a qualitative, longitudinal and rigorous methodology that was framed and guided by narrative inquiry. Data was collected through various methods (e.g., semi-structured interviews, observations, drawings and photographs taken by families) and analysed using narrative analysis. The use of multiple methods and the type of analysis generated rich, qualitative narratives that captured the emotional and practical dimensions of families’ lives with children and young people with limb difference and amputation (LDA). The analysis of these narratives revealed four key narrative typologies: stigmatisation, quest, advocacy, and integration. These typologies traced the evolving experiences of families over time. They highlighted critical issues such as societal stigma, the emotional toll of navigating life with LDA, resource accessibility, physical activity exclusion, and the central role of advocacy in fostering inclusion. Second, this thesis sought to bridge the gap between traditional academic dissemination and narrative-based inquiry by communicating the findings in an engaging manner, through storytelling. Shifting from story analyst to storyteller, I constructed four creative non-fiction stories based on the narrative typologies to ‘show’ rather than ‘tell’ the reader: Why Can’t I be Normal? (stigmatisation), From Last to First (quest), Equal Play (advocacy), and Accept. Adapt. Move On. (integration). These stories were carefully written to ensure they authentically reflected the lived experiences of children and young people with LDA and their families. In doing so, this thesis extends the boundaries of conventional qualitative reporting and contributes to the field of narrative inquiry and the broader discourse on effective and meaningful knowledge mobilisation. Third, this thesis aimed to develop a practical and impactful resource through a co-design process with participants. Following various collaborative working group meetings, the final outcome was a book (accessible at https://www.paperturn-view.com/?pid=ODg8853226), which centred and amplified the voices of children and their families. This resource was intended to raise awareness and promote understanding among educators, healthcare professionals, and the wider public about the realities of living with LDA. Families, charities, educators, health professionals, and lay audiences who accessed and read the finalised resource reported of its authenticity, accessibility, and potential transformative impact. Notably, its impact has extended to receiving an official endorsement from a National Disability Support Organisation (NDSO), thus affirming its value as a meaningful advocacy tool. This thesis contributes to the academic understanding of LDA and physical activity through a social-cultural lens, framed by narrative inquiry and the social model of disability. It also underscores the importance of co-design in resource development and storytelling as a means of cultivating empathy, challenging stigma, promoting inclusivity and giving power back to those who have been marginalised and historically ignored (i.e., “Nothing about us without us”). Ultimately, this thesis seeks to advance a narrative of empowerment and community while advocating for systems that better support children with LDA and their families in building a more inclusive society. The thesis concludes by presenting prospective research directions and applied considerations.
